You’ve Got A Diagnosis — Now What?

“Even for an educated and self-confident person like David, it seems once they get into the health care system and they’re not feeling well, they just melt in that system, and suddenly he forgets to ask questions, forgets what’s important or sometimes minimizes his feelings and doesn’t get what he needs.”

–Debbie Oliver, caregiver for her husband David

At the Partnership, we’ve been thinking a lot about what tools and resources might help patients and caregivers get the supportive care they need, as early as possible. Getting a diagnosis of a serious or life-limiting illness can be a particularly stressful and confusing time, no matter how smart you are, and we’ve been wondering, how might this be simpler?

It’s something we hope to explore with you in this blog, but we wanted to start the conversation with what’s already out there. So today we want to highlight David and Debbie Oliver. Debbie Oliver is a professor and researcher whose work focuses on hospice and palliative care. Her husband, David Oliver, was diagnosed with Stage IV nasopharyngeal cancer in 2012. They have shared their story through an amazing series of videos that has been posted on their blog, David’s Cancer Videoblog. Their videos serve as updates on David’s health, but they also share helpful information for other patients and caregivers. We’d like to share Dave and Debbie’s checklist of questions to ask your doctor when you get a diagnosis. Importantly, Dave and Debbie talk about why palliative care and some of these other issues should be a part of this first conversation.

To recap, here are Dave and Debbie’s questions to ask your physician:

#1 – “So doctor, what are all my treatment options, what are the pros and cons of each, and what is my life expectancy with, and without treatment?”

#2 – “I’ve heard about ‘palliative care.’ What is it, and will you refer me to a palliative care physician or nurse?”

#3 – “If I choose treatment, what are the most common side effects, when will they appear, and what can I do for them?”

#4 – “How much is all this going to cost me?”

#5 – “Who will be my ‘quarterback,’ the one who will be managing all the care I am about to receive?